In Our Shoes: Raising the Voices of MBC Patients

Well, this is LONG overdue, but I’m finally feeling up to using my chemo-addled brain again! You may remember (or perhaps you never even knew) that last spring I conducted a survey of metastatic breast cancer patients. As I’m sure you’ve heard me say before, we are patients who often fall through the cracks when it comes to breast cancer advocacy. Sometimes we scare people, sometimes we don’t fit the mold, and sometimes we are forgotten – or pushed aside. As patients, we know our stories are hard ones to hear, but as so many advocates will tell you, there is no breast cancer advocacy without MBC advocacy. More

Do You Know What Your Trial is Doing?

clinicaltrialClinical Trials – the path to new drugs and device approval by testing them on humans. As I’ve become increasingly involved in the research side of breast cancer advocacy, I’m often called upon to explain trials – what they are, how they work, and why they are necessary. It is, in my opinion, a critical roll played by advocates who advise researchers through the trial process.

Define. Recruit. Support. Disseminate. More

Breast Cancer Advocates: Five Minutes of Your Time, Please…

5minutesI am thrilled and honored to be attending the upcoming AACR Scientist <-> Survivor Program in April! One of the requirements for us as advocates is to present a poster. Mine focusing on giving researchers greater insight into who advocates are and what they do. To do that, I need your help.

The survey linked below is 9 questions long and will take no more than 5 minutes. I am not collecting any personal data and your responses will be combined with those of others; you will not be identified in any way.

Please TAKE THE SURVEY to help me explain who we are, what we do, and why we do it!

Thank you VERY much in advance!!

Health Insurance: Consumer Good

Deadline-ClockAfter an 11th hour extension, today’s the day on which all, well most, Americans are supposed to be enrolled in a health insurance plan. And as a million users are trying to access a hopefully functional website, here’s my take on health insurance.

There’s been social media buzz about health care/health insurance costs, value, and the choices we make, and a general pondering about what these new exchange plans will actually provide. We’re reluctant to pay for health care, especially if we are young and well and believe in our own immortality. Though we gladly pay for vacations, we resent paying for health insurance. We don’t complain about the rising costs at Disneyland the way we do the rising costs of a PET scan or a prescription drug. And of course it makes sense – we work hard, if we can work at all, and the American Dream teaches that we should have some joy in life. When paying to stay alive is all we can do, resentment/frustration/anger follows naturally.

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TAMOXIFEN UPDATE: Everyone Take A Breath, Not More Pills

Since I don’t think I could have said it any better, I have stolen (with permission) the post below from the always-amazing AnneMarie.

Yesterday, I had front row seats to see what happens when a story hits the media during a slow news cycle. People are tired of hearing about the fiscal cliff which I prefer to call by its “formal name.” Does anyone recall the word? Correct!

S-E-Q-U-E-S-T-R-A-T-I-O-N

No matter. It seems we are ready to hang glide but I’ve been too busy running around a two square block area in San Antonio to pay much attention to any news.

San Antonio is lovely. The Riverwalk is charming. San Antonio is bustling. There are researchers and clinicians and all sorts of folks in the breast cancer arena, from all over the globe, in that same two square blocks.

I am here as a patient advocate sponsored by the Alamo Breast Cancer Foundation. We are a group of 31 advocates and we are a busy bunch. Yesterday, the day began at 6:15AM. Breakfast seminar. Then, presentations. Then, more presentations through lunch followed by an interview. (There will be a video posted on the ABCF website and IF I don’t look like a fool, I’ll be sure to share!) Then, a wrap up session on the official presentations and finally, a dinner seminar hosted by Novartis. The day ended at 10PM. Today will be the same. Ditto tomorrow.

This medical symposium is THE event for presentation of the latest in breast cancer research. Each paper gets presented in a 15 minute time slot. Perfect for a chemobrain! Not a chance of getting distracted. If I glance away from the screen for a second, they’ve already moved to the next slide. Yesterday, there was “Big News” expected. It was “The News” for this 35th Annual Symposium. More

That’s Why I’m Here

Regular followers may have noticed that National Blog Posting Month (NaBloPoMo) nearly sucked the life out of me. I was doing GREAT right up until Thanksgiving, when I realized that the point of my being interested and/or relevant was far behind me. So I’ve had a much-needed break, and now I’m back.

But I digress…

James Taylor has always been one of my favorite singer-songwriters, but this isn’t about that either.

(At least they’ve finally confirmed that chemobrain is real!) More

So is Hemlock…

When it comes to cancer “cures,” the debate about natural remedies, complementary therapies, and the medicinal value of peach pits and coffee enemas will likely never cease.

As I’ve posted in a number of forums, I support first and foremost the right of each of us to make our own decisions about treatment. Period. While someone may make very different decisions about treatment than I have, I will never question nor criticize that choice. We each need to sleep at night, and the only way to do that is with confidence that we’ve made the best decision we can, and one that is consistent with our values. I will call out anyone who passes judgment on the choices of others regardless of whether they fall in to the “traditional” or “alternative” medicine camps.  (Read: I’d love your comments on this post, but when it comes to criticizing others, play nice!)

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HR 5937 & National BRA Day – Seriously, I Couldn’t Even Make This Stuff Up!

This month saw the introduction of a bill to require all breast cancer patients be given information about their reconstructive choices. This bill is enthusiastically backed by the American Society of Plastic Surgeons, a group that has also launched…I kid you not…National Breast Reconstruction Awareness (BRA) Day to bring awareness. Personally, I think the crux of the issue is stated quite clearly in the opening paragraph of their press release: “However, only 33 percent of eligible women with breast cancer undergo breast reconstruction…” Ca-ching.

I will be sending the letter that follows to members of Congress…both those who represent me and those I have come to know, urging them to THINK sensibly. I will also be contacting BRA Day spokeswoman Jewel, urging her to RETHINK this insulting, pejorative effort. For more in the blogosphere check out Nancy’s fantastic post at Nancy’s Point.

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February 7, 2002

The room is dark, a desk divides us. He sits, looking down upon me. “You have to stop crying and focus,” he exhorts. I feel the tissue against my face. Where it should be soft, a comfort, it is rough against my already-chaffed skin. Too many tears have fallen. I can’t cry and focus at the same time? I am confused. I can think of nothing but his admonishment, and I cease to hear his words. I know I must capture this information, but I can’t. I shouldn’t be crying?

Doesn’t he know I’m going to die?

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Being the Change We Wish to See…

How does working the night shift impact your breast cancer risk?

Would the early detection of DNA damage help determine future breast cancer risk?

Can breast milk be screened for breast cancer, or to determine breast cancer risk?

Does one’s breath contain biomarkers for the early detection of ovarian cancer?

Might acupuncture improve the sleep of breast cancer survivors?

Clinical trials. This is how we will find the cure to breast cancer. However, the only way to complete and assess the outcomes and potential of new threapy is to conduct and complete a clinical trial. And as frustrated as we can be with the pace of trials, and finding a cure, we hold the key — we can be the change agent….

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